Rare Diseases Symptoms Automatic Extraction

Patient-reported impacts of a conservative management programme for the clinically inapparent adrenal mass.

[adrenal incidentaloma]

The aim of this study was to assess patient-reported impacts and health-related quality of life (HRQL) of a 2-year follow-up programme in a large cohort of patients with stationary, non-functioning, adrenal incidentalomas (AIs) in western Sweden. 145 patients (mean age 68 years, 62 % females) with AI from a prospective study in western Sweden were studied. All had completed a 2-year follow-up programme by November 2007, without evidence of adrenal malignancy or hormone over-production. To evaluate patient-reported impacts and HRQL, an eight-item adrenal incidentaloma impact questionnaire was used retrospectively, together with the hospital anxiety and depression scale, and the short form-36. There were 111 patients (mean age 67 years, 63 % females) who responded to the questionnaire (response rate 77 %). 77 % reported that the AI diagnosis had caused them to be worried; however, fewer than 20 % had thought about the lesion often during the follow-up programme, and only 3 % had felt that it had a large impact on their current daily life. Only 4 % stated that the follow-up programme had been a negative experience, nevertheless 10 % reported a negative impact on their HRQL during the follow-up programme. Only 2 % stated that release from follow-up caused worry to any degree. In total, 29 % had possible anxiety, and 30 % had possible depression, probably reflecting significant co-morbidity. Possible anxiety correlated with a more negative experience of the follow-up programme. In conclusion, the 2-year follow-up programme for patients with AI was well tolerated. Nonetheless, a small number remained worried throughout follow-up, suggesting the need for tailored counselling in individual patients to ameliorate negative impacts of follow-up.

Diseases presenting "small number" symptom

  • adrenal incidentaloma
  • allergic bronchopulmonary aspergillosis
  • aromatase deficiency
  • cadasil
  • carcinoma of the gallbladder
  • cohen syndrome
  • cushing syndrome
  • dedifferentiated liposarcoma
  • dentinogenesis imperfecta
  • dracunculiasis
  • erdheim-chester disease
  • focal myositis
  • gm1 gangliosidosis
  • hodgkin lymphoma, classical
  • homocystinuria without methylmalonic aciduria
  • junctional epidermolysis bullosa
  • kabuki syndrome
  • kindler syndrome
  • lamellar ichthyosis
  • legionellosis
  • liposarcoma
  • locked-in syndrome
  • malignant atrophic papulosis
  • oculocutaneous albinism
  • oligodontia
  • omenn syndrome
  • pleomorphic liposarcoma
  • pyruvate dehydrogenase deficiency
  • severe combined immunodeficiency
  • thoracic outlet syndrome
  • triple a syndrome
  • waldenström macroglobulinemia
  • well-differentiated liposarcoma
  • wiskott-aldrich syndrome
  • wolf-hirschhorn syndrome
  • zellweger syndrome

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